Young people with cancer have unmet social information needs

Social information needs for adolescents and young adults (AYAs) with cancer are highest for certain segments of that population, a study has demonstrated. The investigators defined social information needs, in the context of cancer survivorship, as representing the information and services that facilitate creating, maintaining, and communicating with a support network.

Research is limited regarding the social information needs of persons who were between the ages of 15 and 39 years when they learned they had cancer, explained Xiao-Cheng Wu, MD, PhD, and colleagues in Journal of Adolescent and Young Adult Oncology.

To explore this topic further, Wu, who is the director of the Louisiana Tumor Registry at the Louisiana State University Health Sciences Center in New Orleans, and team launched the Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) Study. A total of 523 AYAs completed surveys 6 to 14 months after cancer diagnosis, reporting information needs for talking about their cancer experience with their family and friends (labeled as TAC, for “talk about cancer”) and for meeting peer survivors (MPS).

Among the respondents, approximately 25% (118 of 477) and 43% (199 of 462) reported a TAC or MPS need, respectively. The findings further revealed the following:

  • An MPS need was more likely to be reported by persons in their 20s than by teenagers.
  • Hispanics were more likely than non-Hispanic whites to report a TAC need.
  • Persons who were not part of support groups but reported needing such groups were approximately 4 and 13 times more likely to report TAC and MPS needs, respectively.
  • Persons reporting high symptom burden were more likely to report TAC and MPS needs.
  • Persons reporting fair/poor quality of care were more likely to report a TAC need.
  • Persons reporting that cancer had an impact on several of their key relationships with family members and friends were more likely to report social information needs.

Wu and associates concluded that efforts should be made to develop interventions for AYAs most in need of social information and support. In this study, those AYAs were shown to be those who received a cancer diagnosis in their 20s, those who were Hispanic, those who reported a high symptom burden and/or lower quality of care, and those who were not members of support groups.

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